In a few days, on Christmas eve, it will be 18 months since I received the stem cells from my donor. All the doctors, nurses, my donor, my family and my friends did such a great job that I am close to be “normal”! Well, I am still a chimera, with half of me being “a woman” DNA speaking!
Last week, I met with my graft doctor. She gave me the results regarding my blood analysis. As you can see below, it is almost “perfect”! I said to my doctor that I did not remember of having such a nice blood analysis. She answered me: but it is not yours, it is your donor’s blood analysis! Good point!
She gave me a Christmas gift in advance: she told me that it was time to reduce the amount of neoral I am taking each day, since the GvH seems to have “disappeared” in the mouth, at the level of the liver (reduction of the transminases amount), and on the sexe. I will keep having the photopheresis on a monthly basis, as it is not good to change two parameters during an experiment! Of course, I will continue the other treatments such as antibiotics and the like. I hope the experiment will be successful! And anyway, it is worst a try! If it was a success, I could dream of being “neoral” free for the two years anniversary of the graft, on june 24th 2018!
But I need to be careful: during Christmas time, we are buying small cookies coming from “Alsace”. Those cookies contain “nuts”. After just “a few” of them, I noticed some irritation in the mouth: maybe it will be better for this year to avoid those cookies! In fact, I had the same kind of result when I eated my banana bread contening nuts , or my home-made bread made from “multigrains” flour… My doctor was surprised that I could make my own bread, and asked me to bring her some home-made bread next time I will visit her at Saint Antoine… Of course I will do it!
For next year, we already have big travel plans: visiting Toronto in february, meeting our Boulder friends in Italy, visiting my good friends in China! We are free to travel!!!
And I would like to take the oportunity given to me to wish everybody a Merry Christmas and an Happy New Year. If I am ready to enjoy this new year, I know that it is because of people in Saint Antoine Hematology dept, of my anonymous donor, my family and my friends! Thank you everybody! I love you all!
Enjoy life!
ppmhk 
Dear Mr Keller
I would like to congratulate you on your great progress and to thank you for what you have written in your blog.
My husband and I live in Japan and have been following this blog earnestly. My husband was diagnosed with MDS in 2014. As it was still categorized as low risk they were watching his blood counts and in the meantime waiting for a good timing to eventually have a stem cell transplant. Then last December 2016, just a year ago from now he was hospitalized with a high fever, the doctors assumed it was some sort of infection. At that time, the hematologist in charge advised that it was a good time to do the stem cell transplant and he immediately started the procedure for finding a donor.
In Spring 2017 we were told they had found a perfect matching donor and that the transplant would take place July 10th. In the meantime, my husband was infected with influenza, then 2 lung infections, in March and in May. It was a sign for us that it was really the right time and the stem cell transplant was a necessity in order to go back to living a “normal” life. Although the hospital was great in giving us practical information we still had a lot of questions and worries. I found your blog from the MDS foundation chat room in May while my husband was in hospital for his lung infection, and immediately forwarded it to him. After reading your blog, everything changed, to learn about your experience, and all the small details that the doctors don’t tell you helped us so much. We were aware that each person is different, but we saw many similarities in your condition and your positive attitude, good spirits helped us so much. We became so much more positive. It’s difficult to express how grateful we were to have found your blog.
He received his transplant on July 10th just almost a year after you, and was let out of hospital 2 months later in September. Initially they said 4 months, and the doctors and nurses were so surprised with his progress. Throughout his stay and since coming home, we continue to re-read your blog at the different stages of your treatment , and to find comfort and joy in your progress. My husband so far has been very lucky to have only very light GVHD but we are still taking high precautions against infections, keeping on a strict diet and away from crowds, as advised by the hospital. We know there’s still a long road ahead but everyday seems to be a progress now and we only have positive thoughts and lots of dreams for when he can live a “normal” life again. And to travel again!
I could go on writing for ages but will leave you with a big THANK YOU for helping us. Your blog meant everything to us. We pray for your continuing recovery and wish you and your family a very Merry Christmas, as ours will be once again!
I am also writing this on behalf of my husband Eiji, since he is a big shy about writing in English.
We both look forward to continue reading your blog!
All the best,
Heather Murai
Tokyo, Japan
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